Tags: aches, arthritis, fatigue, flare, joint pain, knee, methotrexate, pain, RA, reaction, Rheumatoid arthritis, stomach upset, stress, tiredness, work
Well the knee is certainly a whole lot better and I’m now tapering off the steroids – I ended up with 11 days on 40 mg and then a taper down to nothing. The bad news is, not surprisingly, it’s not 100% better yet, and so far I haven’t managed a full day’s work since this started. Fortunately (not from a financial standpoint, but otherwise) we’re not that busy right now. I’m not too worried as that’s often the case in January and there are things simmering away that should come in over the next few months, and it does mean that if I just can’t manage a full day then so be it. At least the boss can’t get cross with me! (Having said that, I’m probably my own harshest critic, so I guess I can get cross with me!)
On top of the whole knee thing, yesterday I had what was pretty much certainly a full-blown methotrexate-related stomach upset, so I’m very glad now that I’m going on the injected stuff in a couple of weeks! Feeling OK today, if a little tired, but I was a complete wreck for a while last night – thank heavens for Imodium is all I can say!
Still, even if I don’t last all day today at work, I’m confident that I’ll be doing so by the end of the week, so things are on the up! I hope things are going well for all of you too.
They say little things please little minds, and my little mind is pretty chuffed at the moment. Here’s why:
- I’ve managed to have a bath – first one in over two weeks, as the leg wouldn’t bend enough to get in the bath before! LOVELY! Apologies if this is ‘too much information’!
- I’ve just been out for a birthday meal with a friend. OK, so it was plan D, with plan A being a long walk pre lunch and lunch in a cafe an hour’s drive away, whereas this was no walk and a pub 20 mins away, but great food, great company and I managed to sit through it fairly comfortably with my leg down. (It’s not my birthday for a while yet, but only date we could both manage for ages!)
- This is the first time this week that I haven’t needed a nap, having had a cracking good sleep last night!
So all in all, delighted to say, I really am on the mend. Not pain free yet but hopeful!
For my next trick … I have to find the balance between some gentle exercise and not overdoing it! Wish me luck and I hope things are going as well for you!
Tags: arthritis, flare, joint damage, joint pain, pain, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
Yay – the swelling has pretty much all gone and so has the inflammation – I have pretty much full ‘bendability’ back in my left knee – woohoo … but yes, I’m still being careful! Of course if you have an injury, swelling and inflammation happens for a reason – to take more blood to the area to repair the injury, and to stop you moving it in ways that are going to cause the injury to worsen. Now in RA, given that it’s those helpful wee blood-cells that are actually doing the attacking and causing the injury, it kind of confuses things a bit, but nevertheless the swelling DOES stop you moving the joint in ways that are likely to cause more injury … and when the swelling’s gone, so is that warning and protecting system. And one thing hasn’t gone yet … the pain! Luckily the pain isn’t there all the time for me, which is great – I’m very, VERY glad about that – but it does mean that while I’m sitting at my desk pain-free and want to leap up and get a cup of coffee, it’s rather important to remember not to leap unless I want to end up an embarrassing heap on the floor!
No doubt about it, this flare is definitely nearly over … but not quite. I was chatting to a friend on the phone the other night, someone who knows me distressingly well, and when I said that she said, ‘Well just don’t go and do anything stupid … like you usually do.’ Now I could have said something (quite a lot actually) about pots and kettles here (Maggie, if you’re reading this you know who I’m talking about!), but I have to admit she has a valid point, so … although today is the first day where I’m not using my stick AND the first day where (so far) I haven’t got my Physicool bandage on (but it’s with me in case I need it), I will still only be working a half-day. And just to make absolutely sure about that, I haven’t brought lunch in with me, so I’ll have to go home if I want to eat … or walk down the road to the shops, which I’m not up to doing yet – especially in icy fog!
I’ve been doing half-days all week and no doubt would have recovered slightly faster if I hadn’t worked at all, but that’s the thing about being self-employed – no work, no pay… and you let your clients down and you get a bad reputation and then you’ve got no business, so here I am! Thankfully this week we haven’t been that busy, but next week looks like a corker so I must be super-careful not to do anything stupid and make sure I’m fine for then.
Tags: arthritis, methotrexate, MTX, RA, Rheumatoid arthritis
Hmm, how many times have I read posts about self-injecting drugs and breathed a sigh of relief that I don’t have to do that? Too many to count. Well, that time has ended, my friends – I will be injecting my MTX in three weeks’ time, after my ‘education appointment’ with the hospital. Mind you, I gather from a small amount of on-line research that this is a very easy subcutaneous (under the skin) injection; not the sort of nasty intra-muscular injection that biologics users have to endure. It seems to be a simple (?!) question of using something like an epi-pen to squirt the MTX in with, but I will find out more when I go and get educated. Here’s hoping I get the sweet nurse I’ve been speaking to on the (yes, actually helpful) helpline, and not the bored and horrid nurse I’ve never liked from day one. We shall see. Either way I will endeavour to be a good girl, listen hard, take it all in and get it right first time. (Not getting it right first time could be messy!)
The reason I’m moving to this course is that I sometimes get stomach problems that may or may not be from the MTX and that many people who take the dose orally don’t get the full benefit as some of it is digested, rather than moving on to the bits it needs to go to in order to work. By injecting, I can keep to the same dose, rather than increasing and risking the side effects that go with that, but hopefully get more benefit from the dose as all of it will go straight to where it’s supposed to go. That’s the theory, anyway. Apparently there are no other advantages or disadvantages of injecting – other than the obvious mild unpleasantness I’m assuming for the injecting!
I’m nearly there, nearly through this flare! It’s still just the knee (although it’s now the knees and legs because although I’m trying to walk well with my stick, it’s putting pressure on the other leg!) However, I finished my dose of prednisolone today so I had to call the doc and say, ‘Not there yet, what should we do?’ She’s given me a few days more of 40 mg and then tapering it down day by day to nothing. Hopefully that will do the trick. Otherwise it’s the dreaded knee injection – the one I swore I would NEVER, NEVER, EVER, EVER HAVE AGAIN! (I also swore rather embarrassingly at the poor doc when she gave it to me.)
In spite of all that swearing, if it doesn’t clear up with the general steroids, that’ll be the way to go because I need to get mobile again and I need to be able to work a full day! I didn’t work the end of last week and today I lasted about 3.5 hours, and that was pushing it. I had to push it as we’re quite busy and had tight deadlines to meet – and one of the JPs was off with a migraine last week and the other junior penguin left early today to pick up the keys to her new house. (Well, I could hardly keep her back from doing something THAT exciting, now could I? And it was only an hour before she was due to leave anyway.)
I’m also very tired – I did sleep well last night but had two terrible nights before that due to a combination of pain and hot flushes (not a misprint, my American friends: we say flushes, you say flashes). Also of course fatigue is part of the joy of RA. Ho hum …
I’m so looking forward to being mobile and awake again – I don’t think it’ll be too long now … so long as I’m sensible, pace myself and don’t try to do too much too quickly. (Easier said than done of course. Wish me luck!)
I’m also going onto injectable methotrexate, rather than oral, but more about that tomorrow.
Warning: this is not an extensive list of things to do when you have a knee flare; everyone’s different. It’s a short list of things I need to do when I have a knee flare, but usually don’t!
- Phone the the helpline AND the GP within a couple of days.
- REST IT! Don’t pretend it’ll be fine if you just ignore it. It usually isn’t!
- Use the darned stick – it’s why you’ve got one, so you can use it. Yes, even in the house! Keeping pressure off a flaring knee helps.
- Use the physicool bandage – it seems to help a lot, especially in the morning, and it feels good too.
- ask for help and accept it when it’s offered. It all helps to keep the weight off the knee and let it mend.
- Loose some weight! Easier said than done! Must ask Carla for tips!
So I’ve been doing some of this over the last few days and the knee is SLOWLY mending. It’s been a week now and I’m still hobbling but hope to be (need to be) back at work on Monday!
So here I am, five to six days into a flare and three days into my prednisolone non-taper – it’s just 40 mg for seven days and then stop. Most of me is on top of the world with all these steroids sloshing about. Hands, great; feet, great; elbow, great; right ankle, only occasional twinges. The good ol’ left knee, however, is another matter.
Wren has her dragon, some people refer to Arthur the arthritis, but for me, I’m picturing tiny little microbe-size mice nibbling away on all my joints going, ‘like the mice on the mouse organ in Bagpus only way, way smaller. ‘Hmm, not as good as cheese’, ‘No, we’ve had better than this, Charlie-Mouse’. Then of course, a la Bagpus (with apologies to all my American friends who’ve probably never heard of him or his mouse friends) they’d start the inevitable song, ‘Eat the joints, eat the joints, nom nom nom …’ And then, finally, making their way around my body, and being beaten off by the steroids (possibly in the form of Bagpus or Emily telling them to behave … or is the point where I’m really losing my mind due to lack of sleep and knee pain?) they finally reach the safety of the mouse-hole in my left knee. ‘This is it!’ ‘Yay!’ ‘Yummy-yummy!’ ‘It’s the cheese mountain …’ And they there are to stay … but hopefully not for very long.
OK, that crazy dose of whimsicality has cheered me up slightly, which is what it’s all about really!
Back to reality – I’m at work (but I don’t know for how long) sitting with a freezing Physicool bandage round my leg, in a freezing office with snow coming down outside, but i have to say the bandage really is helping! I also remembered finally to get my stick out so I’ve been using that, which does help too. I really must remember to get these things out and use them sooner in future!
Guess who called me just a half-hour or so after I called them? Yes, the helpline! I immediately apologised for my rather grumpy message and the nurse then said she hadn’t actually heard it – just been passed on a note to call me. Darn – could have saved myself an apology! <Grin> So I basically told her what I’d said, only less grumpily, and she said she’d pass the info onto the registrar who I saw last, eight weeks before, and if he wanted to up the methotrexate then she’d call me back, otherwise not. She was very pleasant and not at all as brusque as I’ve made that sound – and of course she wasn’t the dreaded voice of the answer-phone message, who’s a nurse I’m not fond of! Anyway, she didn’t phone back, and that was anticipated as since the increase in MTX was only 8 weeks ago it hasn’t officially had a chance to work yet.
I thought it was interesting that the nurse didn’t offer any nursing tips – but perhaps she figured with seven years or so of arthritic knee behind me I should jolly well know what to do by now – which, frankly, is quite true! And she also said that I should call back if I found things not improving or getting worse – which I now feel much more encouraged to do than I did before after my one and only contact with the helpline seven or eight years ago, when they took two or three days to get back and then told me to see my GP!
Well I’ll give ’em that, he called very quickly… but he started off slightly fixated on the bloody helpline. I explained the problem and got, ‘Do you see the rheumatology nurse regularly?’ I said, ‘My next appointment is May.’ He said, ‘Yes, but what about the helpline?’ I said I hadn’t spoken to them this time but their usual response was, ‘Call your GP’ so, after checking my blood tests from the end of December and finding them ‘slightly elevated’ which was news to me, he agreed to a pred taper again, slightly grudgingly, ‘but please do call the helpline nurses. They are the experts in this.’
So I’m afraid I called the helpline and left the sort of message that guarantees no one will bother to call me back. Oops! It wasn’t deliberate but I’m in pain, tired, headachy and generally riled! I phoned up and got the usual, ‘There’s nobody here. I’m bored to death. You can tell by the tone of my voice, can’t you? If you really must speak to one of us please leave your telephone number, hospital number, date of birth and name and if you’re really, really lucky, someone might get back to you in the next couple of days.’ OK, OK, that’s not EXACTLY what it said, but honestly, it was ‘within 48 hours’ and I kid you not about the instantly recognizable tone of voice either! So I left a message along the lines of, ‘This is Polly Penguin, hospital number xyz, day time telephone 01234 567891, date of birth blah blah, I’m having a flare … I’ve contacted the GP and they’re giving me a pred taper but they’ve told me to contact you so I am. Good bye.’ Oh dear. Yes, I regret it now! It pays to stay on the good side of these people … but hey, I won’t hear from them I don’t suppose, and I won’t see them till May when they’ll have forgotten all about it.
If you remember my last brush with the helpline, you’ll know why I feel this way – but it MIGHT have changed since then, even if the phone message hasn’t.